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Covid-19 vaccination experiences
- Thread starter Wits_End
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Binkie4
Senior Member (Voting Rights)
@ukxmrv
I am really sorry you are experiencing this. I'm not surprised it is getting you down.
I too had what I would call severe effects but at about 8-10 weeks they did begin to ameliorate. I don't know how long after v you are but if it is less than this, maybe it will improve in time. This evening too I read on an ME v thread from a person who had extremely severe effects but is beginning to improve at 8 weeks. But that is far too long to be sufffering without help.
I can't help but feel that the country is geared up to promote the public health benefits of the v but some individuals are losing out in the process. At the very least you need access to best medical care. Could you go to A and E, or ask for referral to immunologist?
Sending very best wishes and hope you feel a lot better soon.
I am really sorry you are experiencing this. I'm not surprised it is getting you down.
I too had what I would call severe effects but at about 8-10 weeks they did begin to ameliorate. I don't know how long after v you are but if it is less than this, maybe it will improve in time. This evening too I read on an ME v thread from a person who had extremely severe effects but is beginning to improve at 8 weeks. But that is far too long to be sufffering without help.
I can't help but feel that the country is geared up to promote the public health benefits of the v but some individuals are losing out in the process. At the very least you need access to best medical care. Could you go to A and E, or ask for referral to immunologist?
Sending very best wishes and hope you feel a lot better soon.
mango
Senior Member (Voting Rights)
Thanks for expanding on this, I'm just trying to understand what you base your statements on
I'd be interested in the sources for this bit in particular: "reports seem to suggest that it may be a good idea for pwME to do only one vaccine dose".
What kind of reports? Science and research? Observations by ME clinicians? Patient reports on side effects? Patient reports on effects of getting covid? ..?
I'm having strong doubts about one dose giving "enough" protection for pwME. The data from studies in healthies says one dose isn't enough for them.
Am I to interpret this as there are reports suggesting that for some pwME (who?) it's worth risking getting covid, because the effects of the vaccines are very likely to be worse than the effects of covid itself?
Or does it simply suggest that other strategies, like for example permanent self-isolation, can be a "better" option?
I completely agree that the possibility of very severe long-term side effects of the vaccine can be a much greater risk than some pwME are willing or able to take. Especially reading how extremely badly some have reacted to their first dose, I completely understand if they are advised by their doctors not to get the second dose, or if they make that choice by themselves.
I've been following the discussions in the Facebook group Wyva shared for a good while now, and I'm aware that a significant portion of pwME are experiencing very severe and longlasting relapses, as well as new very severe medical issues that require hospitalisation etc. It's horrifying and absolutely heartbreaking
Having said that, I think it's important to acknowledge that according to the available data, one dose simply isn't enough to give you adequate protection. This has to be part of the decision-making process.
You're using the expression "pretty good", but what does that mean in actual real-world terms?
I have PEM at the moment, so I'm probably not expressing myself very well, sorry. Just want to add that I'm genuinely invested in this, it's not a theoretical debate for me, as I still haven't decided what to do myself. I got ME the last time I was vaccinated, so it truly feels like Russian roulette...
In my area we are still hitting new records of the highest number of new cases in a day/week since the beginning of the pandemic. The most recent one happened only a few days ago
And while that is going on, the decision makers in my country are currently discussing when to open up and how... instead of doing everything they can to stop the spread Self-isolation simply isn't a realistic solution for me long-term.If only there were doctors and scientists studying this and collecting data, to help us make solid, safe choices and decisions...
ukxmrv
Senior Member (Voting Rights)
Thank you Binkie for the kind reply.
I did ask at A&E and they refused. They said it was up to my GP to manage this. On my second A&E visit they said it was likely to be an inflammation of the skull (or something like that) and gave me codeine.
It may be that GPs and the hospital here are in conflict with A&E getting more visits as GP's are refusing to do them?
From reading the questions posted in the ZOE app I can see others with similar symptoms to mine so it's not "just" ME people getting hit by these same things.
Binkie4
Senior Member (Voting Rights)
Have just been digging round and the MEAssociation (CS)has today published a statement saying that not all ME patients have tolerated the vaccine.
There is a focus on 3 cases including Chair of Trustees
Neil Riley who suffered for two and a half months. Haven't yet read it fully but link is as follows
https://meassociation.org.uk/2021/05/covid-19-me-cfs-not-everyone-tolerated-the-first-covid-vaccine/
There is a focus on 3 cases including Chair of Trustees
Neil Riley who suffered for two and a half months. Haven't yet read it fully but link is as follows
https://meassociation.org.uk/2021/05/covid-19-me-cfs-not-everyone-tolerated-the-first-covid-vaccine/
rvallee
Senior Member (Voting Rights)
Ah, that. There have been a few informal surveys of symptoms following vaccines, which vaccine, which dose, etc. I can't remember what to search for it, I think I saw one earlier this week with a good graphic breakdown and another one maybe last week, though I don't think the ones before broke down by vaccine and by dose.
Nothing super compelling but it mostly confirms the trends that I had been seeing.
Where I live there's a minimum of 4 months between jabs so I have time to see more and better evidence until then. Just leaning towards playing it safe for now with the information I have available. The protection from one dose isn't perfect but it's pretty good compared to none.
mango
Senior Member (Voting Rights)
Thank you! Please do share links to the surveys, if you come across them again
Here are links to the main surveys I've been keeping an eye on, but they are only about side effects. There's nothing about other factors like for example how likely pwME are to get severely ill or get long covid, if they are infected.
ME/CFS and the COVID VACCINES (There are links to all their surveys in the first pinned announcements post)
https://www.facebook.com/groups/226441995768222/
https://www.healthrising.org/blog/2...-chronic-fatigue-experts-coronavirus-vaccine/
The recommendations by ME experts and charities I've seen so far are:
https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html
https://batemanhornecenter.org/covid-19/
https://25megroup.org/me-charities-joint-statement-of-covid-19-vaccination
https://www.meaction.net/2021/04/29/covid-19-has-worsened-our-me-report-survey-respondents/
https://www.meaction.net/2021/01/15/me-experts-recommendations-for-getting-the-covid-19-vaccine/
As we in Quebec seem to have the longest break between vaccines, perhaps the second dose won't be so difficult. MY daughter was given a Pfizer yesterday, and the next shot is in September. I don't know of any other jurisdiction with a 4 month break between jabs. The information for reactions is not always taking this time difference into account.
TigerLilea
Senior Member (Voting Rights)
Here in BC we have to wait four months between shots. Only because there aren't enough to go around so they want to make sure that everyone gets their first vaccine before starting the second round.
Thanks for expanding on this, I'm just trying to understand what you base your statements on
I'd be interested in the sources for this bit in particular: "reports seem to suggest that it may be a good idea for pwME to do only one vaccine dose".
What kind of reports? Science and research? Observations by ME clinicians? Patient reports on side effects? Patient reports on effects of getting covid? ..?
I'm having strong doubts about one dose giving "enough" protection for pwME. The data from studies in healthies says one dose isn't enough for them.
Am I to interpret this as there are reports suggesting that for some pwME (who?) it's worth risking getting covid, because the effects of the vaccines are very likely to be worse than the effects of covid itself?
Or does it simply suggest that other strategies, like for example permanent self-isolation, can be a "better" option?
I completely agree that the possibility of very severe long-term side effects of the vaccine can be a much greater risk than some pwME are willing or able to take. Especially reading how extremely badly some have reacted to their first dose, I completely understand if they are advised by their doctors not to get the second dose, or if they make that choice by themselves.
I've been following the discussions in the Facebook group Wyva shared for a good while now, and I'm aware that a significant portion of pwME are experiencing very severe and longlasting relapses, as well as new very severe medical issues that require hospitalisation etc. It's horrifying and absolutely heartbreaking
Having said that, I think it's important to acknowledge that according to the available data, one dose simply isn't enough to give you adequate protection. This has to be part of the decision-making process.
You're using the expression "pretty good", but what does that mean in actual real-world terms?
I have PEM at the moment, so I'm probably not expressing myself very well, sorry. Just want to add that I'm genuinely invested in this, it's not a theoretical debate for me, as I still haven't decided what to do myself. I got ME the last time I was vaccinated, so it truly feels like Russian roulette...
In my area we are still hitting new records of the highest number of new cases in a day/week since the beginning of the pandemic. The most recent one happened only a few days ago
If only there were doctors and scientists studying this and collecting data, to help us make solid, safe choices and decisions...
“In my area we are still hitting new records of the highest number of new cases in a day/week since the beginning of the pandemic.”
Where's that? I thought cases in the UK we’re dropping like a stone.
Getting one dose of the vaccine sounds like Facebook Wisdom. It combines the potential of a long-term crash from getting the shot with the likelihood of in adequate protection from new variance. As someone who had a bad experience with it I will say either get it or don’t, trying to be clever by getting 1/2 will do you zero good.
mango
Senior Member (Voting Rights)
Sweden.
MeSci
Senior Member (Voting Rights)
What were you vaccinated against? I had a tetanus jab around the time I got ME, but I can't say for sure that it was involved. Of course it may have been infection from the dog bite that prompted the jab that caused ME. And I had symptoms before, but I was trying a lot of GP-prescribed drugs as well, which didn't do me any good...I got ME the last time I was vaccinated, so it truly feels like Russian roulette...
lunarainbows
Senior Member (Voting Rights)
I had my 2nd Astra Zeneca last week, it’s much better than the 1st dose. I noticed the same increased symptoms as last time, just have been much less intense, although some symptoms are still lingering.
Mij
Senior Member (Voting Rights)
I have PEM at the moment, so I'm probably not expressing myself very well, sorry. Just want to add that I'm genuinely invested in this, it's not a theoretical debate for me, as I still haven't decided what to do myself. I got ME the last time I was vaccinated, so it truly feels like Russian roulette...
Did you have a viral infection at the time you were vaccinated?
I was vaccinated with several vaccines during a viral infection when I got ME.
I'm not vaccinated yet, but have no problem getting the doses once my current viral infection is gone.
lunarainbows
Senior Member (Voting Rights)
Hi, @ukxmrv, I know this might not be any consolation and only you know your symptoms best - but what you have described above which I’ve quoted, are symptoms of my severe ME, and have been described by the headache doctor I saw, as migraines and chronic headaches for me too. It may be that the AZ jab has triggered intense migraines for you. I know these symptoms aren’t usually written in migraine lists, but they are recognised as symptoms of migraine - which can be very wide ranging and odd. The light and noise sending bolts of pain through my head is something I experience. As well as the jaw, forehead and other pains. I also get occipital neuralgia type pains. Changes to taste and smell and sensory issues can also be described as migraine symptoms when they occur - although they could be caused by other things too.
I know it’s possibly something different for you too - but maybe if it is migraine that is suspected, then if you get the right treatment for migraines and headaches - ie referral to a specialist headache centre - it could help you (they have access to more medications than an A&E general hospital dept or GP would have). They may also be able to do differential imaging to rule out other conditions? At the migraine trust website they have a list of all the specialist headache centres in the U.K. I hope you find something to help. (I haven’t really gotten proper help for my headaches yet as I can’t take many new medications at the moment, but I know others do exist!).
Edit: clinic map for specialist centres in the U.K. - https://www.migrainetrust.org/livin...g-medical-advice/migraine-clinics/#clinic-map
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ukxmrv
Senior Member (Voting Rights)
Thank you for the kind message Lunarainbows. I don't think a migraine would cause the rashes and other problems I am explaining.
It's been over 8 weeks constant and from the migraine group I joined this, as a first and only experience is unusual.
I lost my sense of taste and smell overnight after the vaccine and I'm not ruling anything out but I need to see a proper specialist. There are other things it could be.
None of the centres you kindly posted are near me but I phoned the closest one. The number no longer operates but I tracked someone down through the hospital switchboard. They are all working from home. Very long waiting list.
If I search and find the named doctor and phone I can get a face to face appointment in 2 weeks time privately. It's the same with my local hospital. No Neurological or migraine appointments face to face and a wait until September for an urgent one. Same doctor will do a private face to face in 12 days.
This is not directed at you but an explanation. Part of my reason for posting is to talk about how those of us with adverse vaccine responses are in some areas being left high and dry. It sounds as if the NHS is still on "Covid alert" and face to face clinics at least in some area not operating. I know some are doing well on Zoom (my Sleep clinic) but I've yet to find one in Neurology, migraine.
p.s. I noted from my local Facebook page that my GP clinic closed appointments system yesterday due to "patient safety" concerns. The posts in reply to that talked about delays in weeks to get a call back if at all and hospital appointments now into 2022.
It's been over 8 weeks constant and from the migraine group I joined this, as a first and only experience is unusual.
I lost my sense of taste and smell overnight after the vaccine and I'm not ruling anything out but I need to see a proper specialist. There are other things it could be.
None of the centres you kindly posted are near me but I phoned the closest one. The number no longer operates but I tracked someone down through the hospital switchboard. They are all working from home. Very long waiting list.
If I search and find the named doctor and phone I can get a face to face appointment in 2 weeks time privately. It's the same with my local hospital. No Neurological or migraine appointments face to face and a wait until September for an urgent one. Same doctor will do a private face to face in 12 days.
This is not directed at you but an explanation. Part of my reason for posting is to talk about how those of us with adverse vaccine responses are in some areas being left high and dry. It sounds as if the NHS is still on "Covid alert" and face to face clinics at least in some area not operating. I know some are doing well on Zoom (my Sleep clinic) but I've yet to find one in Neurology, migraine.
p.s. I noted from my local Facebook page that my GP clinic closed appointments system yesterday due to "patient safety" concerns. The posts in reply to that talked about delays in weeks to get a call back if at all and hospital appointments now into 2022.
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lunarainbows
Senior Member (Voting Rights)
@ukxmrv yes for sure there are other things going on with you too - it’s just the head parts which I quoted above which fit with what I experience as migraines / severe headaches.
I’m not surprised about the wait list at all. I have heard the NHS wait list for the specialist headache clinic in central london is 1 year.
I’m not surprised about the wait list at all. I have heard the NHS wait list for the specialist headache clinic in central london is 1 year.
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Simbindi
Senior Member (Voting Rights)
Seems to be an issue across the NHS, if someone is doing research into how A&E are dealing with patients with severe headaches. It might be worth you emailing this researcher with your recent experience.
